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Episodic vs Chronic Question (Read 1469 times)
lsarver3808
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Episodic vs Chronic Question
Nov 20th, 2011 at 12:20pm
 
My worst fear as I am sure is my husbands also, is that his episodic clusters turn chronic.  My question is for those of you who have gone chronic, is it different?  Do the number of attacks go down?  What about the intensity?  I could not imagine my husband being hit like this indefinitely.  He is now 6 weeks in and it is at the point of effecting his concentration and he has withdrawn.  He gets hit about 6-8 times a day.  Getting very little sleep.  You know the drill. 
Afraid to go lay down for fear it will bring it on sooner.  I feel for everyone here!  This is horrible!  Thanks!

Lori
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Bob Johnson
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Re: Episodic vs Chronic Question
Reply #1 - Nov 20th, 2011 at 12:25pm
 
Others will tell you about their experiences but I want, only, to encourage you both to not try and forecast the future. It's a losing chore which will only make for more anxiety; keep the focus on learing how to manage what is on your plate now.
------

J Headache Pain. 2005 Feb;6(1):3-9. Epub 2005 Jan 25.

Chronic cluster headache: a review.

Favier I, Haan J, Ferrari MD.

Department of Neurology, K5-Q Leiden University Medical Centre, 9600, 2300 RC Leiden, The Netherlands.

Cluster headache (CH) is a rare but severe headache disorder characterised by repeated unilateral head pain attacks accompanied by ipsilateral autonomic features. In episodic CH, there are periods of headache attacks with pain-free intervals of weeks, months or years in between. A minority of patients have the chronic form, without pain-free intervals between the headache attacks. Chronic CH can occur as primary or secondary chronic CH; the rarest form is episodic CH arising from chronic CH. In this article, we give a review of the chronic forms of CH and focus on demographics, clinical manifestations, social habits, predictive factors, head injury, genetics, neuroimaging and therapy. IT IS REMARKABLE THAT LITTLE IS KNOWN ABOUT RISK FACTORS THAT MAKE CH CHRONIC.

Publication Types:
Review

PMID: 16362185 [PubMed] 
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Bob Johnson
 
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wimsey1
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Re: Episodic vs Chronic Question
Reply #2 - Nov 21st, 2011 at 8:32am
 
Bob is right. I would say, as a chronic, that a neuro will probably become more aggressive (or should) when the hits are not relieved by your husband's current regimen. Whatever he is taking it isn't working as well as it should and he ought to get to the neuro for some strategic planning. Episodic or chronic, while being attacked, the pain is the same. Chronics just tend to know when the hit will come and have to take prevents and use abortives pretty much every day. I am now at the point where my hits are manageable. But don't think of it as a lifetime proposition. Think instead of how to to take the beast down now! Blessings. lance
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Guiseppi
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Re: Episodic vs Chronic Question
Reply #3 - Nov 21st, 2011 at 8:52am
 
What Bob and Lance said. 33 year episodic sufferer, still not chronic! Smiley

And do look at either getting your doc to get a little more aggressive in his treatment plan, get a new doc, or maybe even consider going to the "dark side"... Shocked....visit our sister board for alternatives to main stream medicine. Go in with an open mind, meet the people who have succesfully used these techniques to get pain free, and see if it might work for you. Some of my best friends on this board are pain free going this route. And they were some of the worst off cases.

Clusterbusters.com

Thanks for supporting my CH brother. Don't think I would have made it 33 years without the wifey helping me along.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Matt Miller
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Re: Episodic vs Chronic Question
Reply #4 - Jan 19th, 2012 at 5:41pm
 
I am a 10+ Year CH'er. Always chronic, never episodic. I can say that from everything i have read/researched/etc the pain and feeling are the same, just less PF days with Chronic (if any). In my entire 10+ year ordeal, i have had no more than 2 pain free days (except when on a high predisone taper, and it was only 5 PF days then).

Even as a Chronic, i still cycle somewhat. I've found warmer months i get more hits in the day time (allergies maybe?) and in the winter months they hit at night. The night ones are usually (but not always) WAY worse. day time usually hit Kip6-7 and night ones are Kip8+.

Pretty much all CHs are the same, and all CHs are different! The demon dances a different dance with each of us, but the song is the same!
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IndianaJohn
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Re: Episodic vs Chronic Question
Reply #5 - Jan 21st, 2012 at 9:43am
 
Hi Lori,

So sorry that your husband is hurting.

I went from episodic to chronic last year.  My attack got progressively worse over the year.  Spring and summer were not too bad, but then fall hit and things got much worse for me.  Then at the beginning of November my meds lost thier effectiveness.  Even massive doses of prednisone wouldn't work.  So I did the unthinkable, I went off of ALL my meds for two weeks.  It was it's own little version of hell.  Then I got my Oxygen and things became bearable.  I started the D3 regimen and then went back on my meds.  They worked this time.  I have been pain free for three weeks now.  That is the first time in over a year that I have had that much PF time.

So between the Oxygen, Prednisone taper, D3 regimen and verapamil I finally got some relief.  I was like you and your husband, deathly afraid of turning chronic.  I wholeheartedly believe that going off my meds for a short while "reset" their effectiveness.

Is your husband on any meds?  has he seen a doctor or neurologist?  do you have any O2?

My 2 cents is get some oxygen asap.  even if you have to get a welding set up for it.  It made a HUGE difference for me.  I can abort a HA in minutes and it keeps the intensity down as well.

I also take the D3 regimen but I take a higher dosage of 30,000 IU of D3 and 1000 mg of calcium per day.

Take care and there is hope for your husband of knocking the beast back down again.  I did it, he can too...

All the best,

John
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Did my brains fall out or is this headache over?
 
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coach_bill
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Re: Episodic vs Chronic Question
Reply #6 - Jan 21st, 2012 at 1:42pm
 
lori,

He wont go chronic!!!  You will get your husband back soon. And dont let him beleive he is going chronic.

Please read this link.  It may help in ending his cycle... Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Play thourgh it...
Coach bill
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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Linda_Howell
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Re: Episodic vs Chronic Question
Reply #7 - Jan 21st, 2012 at 6:37pm
 
Quote:
encourage you both to not try and forecast the future. It's a losing chore which will only make for more anxiety


I second this.  Or third or fourth it.   There is no need to even think about going chronic at this point.  Some do...MOST don't.  To worry about it is totally fruitless.
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Hurt people.....hurt people.   Think about it.
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